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26 November 2008

One year ago today my life changed in a dramatic way. One year ago today I was taking a bath about mid morning. When I got out I noticed a little blood (hardly anything, really). After losing Kyle Ann 9 months before, I didn't want to take any chances so I went in to the Dr and had him check me out. He said I looked good and the boys sounded great. I wanted to know what the slightly pink blood was from and he agreed that I should have an ultrasound. I then drove myself to the hospital, stopping to get lunch on the way. I called all the family and told them I was fine, not to worry and I would call and check back with them later.

When I got to the hospital they checked me into a room, hooked me up to the monitors and were keeping a close eye on me. I had no contractions and we waited around for the Dr to get over to the hospital so he could check me again. Before checking me he sent me down for the u/s. The tech was very quiet and he said the boys looked good. I asked him how my cervix looked and he said it was funneling and baby A was laying in the funnel. I knew right then that this was bad news. But, I figured they would keep me in the hospital and all would be just fine. When I got back to my room the Dr checked me again and this time my cervix had changed. When he saw the u/s results they decided to transfer me to a level 3 NICU hospital for fear that the boys would be born soon. I didn't believe them. They started iv's in me, gave me steroids and prepped me for a flight to Pitt hospital that is over an hour drive by car. I was more scared of the flight than I was of the boys being born!

By the time the helicopter got to me the weather had turned off bad and they couldn't fly me out. I had to take an ambulance (S-L-O-W!) and they wouldn't even turn on the lights because I wasn't that "kind of patient"!

When I got to Pitt, I was set up right away in a room and monitored again where by now I had started to have a couple of contractions. The contractions had started in the ambulance and were few and far between but I knew it wasn't good to be having them especially since I was funneling and now starting to dilate. It took a LONG time to get a Dr in to see me and when they finally got in and checked me, my sweet little Liam was thighs down and out into the birth canal. Because Liam was laying on my cervix, his amniotic sac was slipping right into the birth canal. The look on the Dr's face when he felt how far out Liam had come was one of pure fright. They called in the high risk Dr on call and he advised me that I should have a c-section. He left the decision up to me but said that Liam was so far down in the birth canal that if he broke the bag of waters he would be in a lot of distress and he would rather deliver 23 week twins in a controlled environment than in a stressful one. And it would be more stressful on Liam to be born breech.

I decided to go through with the c-section after he assured me there was nothing they could do to keep my boys in very much longer. Shortly after midnight in the very early morning hours of Nov. 27, Liam and Brady came into this world. Liam was baby A and he had wonderful apgar scores of 7 at 1 and 5 minutes. And he cried when he was born. Brady had apgars of 2 at 1 and 5 minutes. He remained silent. Brady survived for one day and succumbed to his premature, undeveloped lungs. I did not get the steroids early enough for them to have been any benefit to my sons. It's amazing that Liam did as well as he did and had scores as high as he did for a 23 week baby. The NICU staff was amazed at how well Liam did when he was first born because he presented more like a 25-26 week baby.

It has been a year that I would have never chosen for myself or my family. I believe that the Lord knows best, though. and that He has chosen this path for us to follow for a reason. I know that Liam brings so much joy to us and every time he smiles it is a miracle. Liam should not be here. He should not have survived being born at 23 weeks gestation. He should not have survived his infection he received in the hospital that was so life threatening they would have called us in to say goodbye had we not already been there with him. Liam's lungs made it through in great shape when he had a PDA that sent too much blood to them for almost 5 weeks.

Liam is a tough little boy with a smile that will melt your heart. He is a fighter. And he wouldn't be here on this earth if it wasn't all a part of God's plan.

We have high hopes and big dreams for what Liam will do. We believe that all things work for good for those who love the Lord and are called according to His purposes. And we believe that through God ALL THINGS ARE POSSIBLE! Each day- I only have to look at my son to know how true this verse is.

19 November 2008

My smiley guy is back but he is still battling snot. And a new thing occured yesterday- he refused two of his bottles. I had to feed him the two bottles with a syringe. I'm not sure what OT is going to think about that since we don't want him being averse to his milk, but I was a desperate woman. He hasn't consumed anywhere close to his "normal" 17 ounces of food in weeks and he needs every drop I can get down him. His reflux really seems to be doing quite good at the moment and I am wondering if the adverse reaction of lowering his hunger has now affected him. It would be nice if Liam had come delivered with a manual. He is outside my expertise in mothering!

17 November 2008

Oh- what a weekend it turned out to be for us. Not because of the therapy but because Liam and I both got sick. I have horrible laryngytis and Liam was running a fever and coughing (which would help him gag and then vomit). Luckily he is on the mend now with no fever, just a pesky little cough. I on the other hand am still feeling yucky. I will chalk it up to not nearly enough sleep so I am quite a bit drained. And no one can hear me talking.

ok- onto what everyone wants to know...

I loved going to this therapy with Carla. I watched her do 6 sessions with Liam and I was thinking for a lot of the time that it didn't look like she was doing a whole heck of anything. But when you watch a little closer you realize she is constantly feeling his muscles as she moves his limbs and back. Because Liam has neuro injuries, his brain doesn't tell his muscles how to work like a healthy baby's does. He misfires his muscles and he still flails around like a newborn. What Carla did was feel Liam and move him, when he allowed her to, in order to show Liam that he can form new neural pathways to move his body properly all by himself. Does that make sense the way I wrote it?

She never forces Liam into any position or force his muscles in anyway. She does not want to inhibit the process Liam needs to learn to use his body. The fact that Liam doesn't keep his head up yet is not her concern. She wants to see Liam progress out of his newborn movements. Liam needs to gain awareness of his body in space and the feeling of moving his limbs in a natural way and this therapy can teach him how to do that. We need to see Liam get on his own learning curve just like a healthy baby does. I'm thrilled with this therapy because it just makes sense. Liam doesn't know his body isn't working right. He doesn't know he is supposed to be doing things in a different way. But he can learn how to acheive these proper movements when we give him the opportunity to form these new neural pathways. It's shown wonderful results in kids with CP so we are praying that Liam will respond and open his mind to free his movements.

The hard part for me is that Carla wants me to be very observant about how Liam does over the next couple of weeks. And I'm not very good at that. I am going to try but it can be tough when so much is going on in my daily life. I do believe that Liam moves his legs more freely than he did before our sessions. He movements feel smoother, less jerky. If you saw Liam laying on the floor, he jerks his arms and legs instead of moving them smoothly and he is constantly moving them. After this weekend, it feels to me that his legs are moving smoother. It will be interesting to get my PT's persepective tomorrow. I am hoping things can work congruently allowing the best of both worlds for Liam.

We are scheduled for more ABM therapy for Dec 5-7. Carla said she wants to see Liam get on his learning curve and then we can space out the appnts farther. Of course, if I'm not on board I wouldn't go, but I definitely feel it's the right thing to do to help Liam progress.

I'll leave ya with something cute Liam did before we left...

I was feeding him in the living room on our couch when Rylie pulled up my blog. She went to the older video of the kids playing with him and making him laugh. When the video got to the part where they said "how big is Liam?" he started laughing. It was so sweet because 1) He heard this coming from the tv which was far behind him 2) He recognized the words 3)He laughed at it several times. I kept telling Rylie to rewind it and she videotaped him laughing at an old video of himself laughing. It was sweet for me to see him recognize it. It's very hard when you don't get those visual clues to know if he understand yet what we are saying. But this was a clear response that he understood what was being said!

14 November 2008

We got to Virginia last night at a little after midnight. We left our home at 5:15 so the 5 hour trip ended up taking 7 hours due to a few stops to feed Liam, one bout of vomit and potty breaks for Aidan and Mimi! It's beautiful up here right now with all the leaves fallen. I didn't get lost, not even once! The hotel is only a couple of miles from Carla's house and I think I've gotten the hang of the area here.

Liam had two good therapy sessions today. I went to the first one skeptical and expecting to get nothing different out of it but by the end of it I was glad we had come. The therapy was fully hands on the entire session and not once did she force Liam into a postion that he didn't get into on his own. That's a HUGE difference from our regular therapy. Not that our regular therapy is wrong- it's just different.

Our evening session went really well and Liam had Carla getting him into cute positions with his hiney in the air like a big boy. When he was done- he was DONE. I don't know what has gotten into him lately but the last few days he has not been my happy, little boy. I think the reflux has damaged his throat, making it sore and contributing to his gag reflex. Liam is normally great for his PT but on Thursday he didn't want to work with Cathy at all. That was unusual. He hasn't been smiling as much lately either. After 3 days on his very low dose of Prevacid I called the Dr back and told them he needed to take a stronger dose. My Dr wasn't in and they asked if I could wait until the next day when he was back. I told her no. They needed to have the Dr that was in call me back because I wasn't going to wait any longer. They agreed to let me give him a full dose of 15 mg 1 time a day or split that dose and give it to him twice a day. I opted for the once a day because the medicine is supposed to be given on an empty stomach and since I have to feed Liam all the time during the day there is not a second opportunity to get it in him. And kids with sever reflux, like Liam, can still get double that dosage if this one still doesn't kick it.

Liam had his first full dose today and he only threw up twice! That's huge! I don't know if it is the meds or just a fluke but I am praying that this continues. I have broken down in tears of anger and frustration over the puking in the last few days. It's such a downer to work so hard to get him to eat and then have him send it flying right back out. And like I said, he is so uncomfortable with it. I know I would be if I threw up 4-5 times a day!

My dad called me with bad news earlier. Our oven went out (no lights, no beeps, no heat) and our dishwasher isn't getting any water into it. Why does this have to happen when I am in VA and Shawn is in MO??? I told my Dad that I really would love to get new appliances for the kitchen but that I wanted to be able to afford them first. So he is going to have to figure out whats wrong and get it fixed (he has always been the epitome of a Mr. Fixit and if he can't fix it, it is completely broke).

Thank you Allison and Rebecca for praying for us. And everyone else who is on this journey with us. I can't imagine doing this all with out you.

12 November 2008

I don't want to drown. Not in debt, not in doubts and not in fear. So we are stepping out with faith and taking the plunge and praying that our awesome God will keep us afloat.

I leave for Virginia tomorrow. I will be gone 4 days. Liam will get therapy there with Carla Reed, a woman who was a regular physical therapist for 18 or so years and now practices using the Anat Baniel method. We will get two sessions a day for 3-4 days. I am excited for many reasons. I am hoping it will be a therapy that Liam responds well to. I am hoping it will answer questions and doubts. And most of all I am hoping that through this experience we will be able to give all of the experiences to Liam that he needs to grow and prosper and become the best little person that he can be. God has an amazing plan for him and our family and for those who have come to know him. We are praying for great results from this trip and that it is time and money well spent.

I have not felt like we shouldn't go. I talked with everyone involved with Liam from his pediatrician to all of his therapists and everyone was for it. How much more affirmation do we need to know that we should go? So, we are off tomorrow on Liams first major trip. I am taking cleaning supplies so I can disinfect the hotel and I was very close to packing the carpet shampooer, LOL, because I am afraid of the germs. But I didn't think I would like what I found in the shampooer when I was done and I figured it would take about 4-5 shampooes to get hotel carpet clean. I will be bringing my own comforter and Liams bassinet along with about 15 outfits for Liam due to all the vomit. We are bringing his bouncy seat, basket of toys and a stroller. Hmmm...I hope I have room for my things.

09 November 2008

My fellow micro preemie moms will know what Anat Baniel Method is, but for all my other faithful followers I will give a (very) brief explanation. It's a form of therapy. Was that short enough!? ;-)

Seriously- it is a method of therapy that has shown wonderful results on children with brain injuries. The method was talked about on my micro support group and I decided it would be worth checking into. I was hoping for someone in Raleigh but no such luck for me. The closest ones who practice this method of therapy are 5 hours away. There is one here in the beautiful mountains of NC but he is not as experienced with children. The DC area offers several and one who works with a lot of children. She actually was familiar with Liams rare brain injury and was/is the therapist for the VA march of Dimes spokesperson who has the same injury Liam has! And this little girl is doing wonderful!

Here's the catch...I am not positive and need to check into it more fully but I am pretty sure insurance will pay ZERO. We have BCBS and although they are wonderful with PPO's they are not so good with things of this nature. ALL of Liam's therapy is denied coverage by BCBS because it is done in the home by non-PPO's. They DO pay if it is done in an "office" but I would be crossing state lines to go to her office and I don't think it is going to fly. If anyone knows anything about getting insurance to pay for neuro muscular re-education please let me know!!

The therapist charges $125 a session. Which really isn't terrible except that the therapy works better when you have short burst of a lot. So Liam would need 2 sessions a days for a minimum of 3-4 days. That adds up quick! Let alone that I have to drive to VA, stay in a hotel and pay for gas.

I've been praying about it and I feel like I should take Liam at least once just to see what happens. It's a LOT of money for an experiement (will he respond to treatment?) but I don't think I could live with myself if I didn't find out for sure. I told my girlfriend I should have the kids do a fund raiser and sell plants or something. LOL One trip for therapy will cost around $1000. We just don't have that sitting around here these days. Maybe I could sell a kidney?

Liam spent the weekend throwing up half of what went in. I don't know how he can give such big smiles after puking all over the place. They make cleaning up the vomit a bit easier anyway.

06 November 2008

Fall is my favorite season and it was something I greatly missed when we lived for so long in southern California. There's nothing like a fall day to set your mind on the holiday season to come, to get you in the spirit of Thanksgiving. The colors are beautiful and the air clean and crisp. Autumn is a season that delights all of your senses. This picture is from my front yard. The leaves are dropping quickly now and the season will soon be over. I wanted to capture a bit of the color before it's all gone.

05 November 2008

Check out the photos of Liams first Halloween. He was so cute! If you can't tell in the picture, he is a lion. Rylie was already gone for the evening so she didn't get in the family shot.

I have had a stressful week. I try not to let things get to me and I am usually pretty good at that but Liam's reflux has me so darn frustrated. I want to scream. I feel so bad for him. He has never had the reflux this bad and I can't understand why the constipation of a few weeks back could have contributed to such a big change in his refluxing but I don't see what else we can attribute it to. Yesterday was the maximum that I can take and so I am putting him back on meds. He was only on Zantac for a short time because it didn't do any good (visably anyway) and I decided to start feeding him small amounts and it worked. We took him off meds (he's been off for 4 months) and he has done really well with it. But once he got constipated it was like his sphincter opened up and stayed that way. Yesterday I changed his outfit 4 times. On the final throw up of the day he just vomited a little bit and this was surprising because it had been an hour since he had eaten. I picked him up, patted him on the back and then he proceeded to hurl more food out his mouth and then up his nose. Liam couldn't breath. He instantly started flailing. I had Ian run to get his bulb syringe and I wiped his face with a wipey. I then suctioned his nose to no avail. I started beating him on the back all while he is thrashing around on the floor trying to get some oxygen. I am debating on calling 911 and decide to blow down his nose. He still isn't breathing. Meanwhile Ian (the only one around) goes flying out the front door because he is scared to death his brother is dying and he doesn't want to witness it. I am still patting Liam on the back telling him to breath (like he understands me!) and I decide to call 911 even tho they are 5 minutes away and he will be blue and breathless when they get to us. When I start to walk out of the living room to go get the phone, Liam finally got in a little, tiny, whisper of air. He lays his head on my chest and I can hear the fluid he is trying to breath around. I just keep patting him on the back (I had no idea what else I could do) and he finally starts breathing quickly and deeply. I lost it. It's such a frightening feeling to watch someone try to drown! If Liam only knew that he could breath through his mouth we would have been fine but he doesn't understand that yet. It is truely an indescribable feeling to think you are watching your baby die. And the time that passes while you are in the midst of it seems to be an eternity. I know it wasn't too long because Liam didn't turn blue, just a pastey white. But still, it was way too long for him to not get any air. I don't want to experience that feeling ever again. I am praying that meds will help calm him back down and help him with the gagging.

I also think Liam has gotten even slower in his digestion since the constipation. He just threw up again (while sound asleep for the night) and I fed him almost 2 hours ago. And when I fed him he only ate 2 whopping ounces of formula. So it isn't like I gave him this huge feeding and his tummy was full. His stomach should have been close to empty after eating such a small amount. I'll see what Dr. C says about it and we will go from there. But I am definitely getting him some sort of meds.

02 November 2008

Does this look like a sensitivity rash? I think Liam has sensitive skin but this rash popped up late this afternoon and I'm not sure what caused this one.The only time I've seen this rash on him before was when I used a brand new bib without washing it and I wiped his face clean after feeding him. I attributed that rash to the bib (with all those commercials chemicals on it) other than pointing the blame at the second day of introducing carrots.

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This blog has journaled the fallout of giving birth to a micropreemie & how it's affected everything in our life from marriage & family, to friends & church & beyond. Liam's early arrival gave him a list of diagnoses like CP, CVI, & ROP. His most impacting special needs are his mixed tone ataxic/athetoid-like cerebral palsy & vision issues. He's non-verbal but teaches us all. Follow along as we try to live this crazy normal, knowing God is the author and he isn't finished writing this story.